Friday, September 19, 2008

lorenzo's oil: a tale of struggle, courage, persistence and unconditional love

what would you do if someone told you that nothing could be done? that there was no hope? would you stop dead in your tracks, accept fate and just leave the fight?

"Life has meaning only in the struggle. Triumph or defeat is in the hands of the Gods ... so let us celebrate the struggle!" (Swahili Warrior Song)

this was the thought-provoking opening line of the movie lorenzo's oil.

a tale of a vibrant six-year old boy ... about to start his life in this world, weighed down by a rare neurological illness called Adrenoleukodystrophy or ADL begins his life instead with a struggle ... a struggle that would leave him literally speechless, almost paralyzed and condemned to a death sentence. the doctor who diagnosed him said that usually children suffering from ADL die two years after diagnosis.

his parents could only shed a tear at that moment of truth and later put on a brave face to hug their young son.

but the parents didn't give up. they looked up all of the literature to be found on ADL. they sought out doctors who were working on therapies and enrolled lorenzo in clinical tests only to be disappointed. "this isn't how science works" they said when asked by the parents if the process could be sped up or stopped. they needed to follow a protocol. for parents with a dying child, protocol goes out the window. what kind of process would help ease the pain of imminent death?

the father augusto odone played by nick nolte describes to his wife, michaela, played by susan sarandon to treat the disease as if it was coming to a new country ... trying to understand it ... knowing it ... they conducted their own research ... nolte and sarandon found under heaps of books, finances taut, they took out a first and second mortgage on their house, but never let any ray of hope pass without taking a chance. anything, anything, there was no price they wouldn't pay to ease the pain of lorenzo, to fight this unfair battle for him.

lorenzo never gave up either. as he struggled against suffocating even from his own saliva, he grew to be 30 years old before he died in may this year.

but most of all the struggle was a collective fight. it was lorenzo's parents who never wanted go give up. sarandon portrayed to be a mother incessant in making lorenzo's life "not silent" as he promised him showered him with her love, sometimes neglecting her own health, happiness and her own husband. she made sure that lorenzo was treated with dignity by all the people surrounding him even if he lay in his bed only able to move his eyes and pinky. she egged him on, like a real mother to "tell your brain, to tell your hand, to tell your pinky to move". she gave voice to the muteness of his spirit caged in a body that was alive but almost unhuman as he was fed by tubes. his father, a "simple man" as he described himself searched for any possible lead in all that he could possibly consume in books, experience and people. their passion was infectious. his aunt who was a carrier was lorenzo's hope in testing the controversial oil (oleic acid and erucic acid - found in olive and rapeseed oil, respectively). it was his friend amori who came from the comoros who relived their youth in singing songs and just being a friend in time of need.

augusto and michaela fought against information monopoly, scientific protocols, cowardice and ignorance. when accused of arrogance, augusto defined arrogance by going back to its latin roots "to claim for one's self" as he claimed not to give up on his son as parents as the ADL foundation refused to disseminate information about the effects of oleic acid.

there was no hurdle high enough ... michaela has since passed in 2000 but augusto lives on. he plans to write a book giving tribute to the struggle of his son. he lived 30 years, 20 years more than the doctors predicted.

struggle, like pain is difficult. it's discouraging and often tiring. it's easier to give up than to keep at the fight. at what cost? for some, there's no giving up. there's only the will ... the will to live, to fight and never lose hope in the face of desparation.

i would like to salute and celebrate lorenzo's struggle and his victory. i call it a victory because his experimental treatment of oil patented by his father has improved the quality of life of so many boys suffering from ADL. it is evidence that battle was not fought in vain. that even in the face of death, there's hope.

let's celebrate the struggles of life. let us wear our battle scars proudly just to say "i made it out alive".

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